Tales of a Terminal Mummy

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A Lifetime Of Love

Close your eyes and take a second to imagine your child at age 21. All grown up, able to drive, drink alcohol, fall in love, travel, get married, have a baby…live. Imagine the role you will play as their loving parent, whilst they grow and face some of life’s biggest moments, joys and hurdles. The advice and guidance you will give, the epic battles and storm outs and the bond you will create with this most precious treasure. The hope that you will be best friends and share the world. As a parent, you don’t expect that this will not be your reality when your baby is first placed in your arms. You take for granted the moments you have to teach and shape and nurture. As I look at my precious treasure, who at this very moment lies beside me at the tender age of 6, I feel my heart aching with a tangible heart ache – because I will not get this opportunity. Cancer stole it from me. Waltzed in like the worst nightmare possible and stole every hope I ever had as a mother. And I want to scream. I want to scream at the epic loss that we all face, and at the thought that someone will most likely (and hopefully) take my place.

I recently asked my psychologist if he thought I had depression. I mean it makes sense really, how one could easily become depressed as cancer all consumes. I was shocked to hear him most confidently tell me I do not. “You are grieving” he said. Grieving for the loss I have already faced and will continue to face on a daily basis, and of course the loss of that which I know I will never get to see, do or be. This pales in comparison though, to what I know Nyah will face her whole life as she walks her path without her mummy. So, I am on a mission. A mission that sees me put aside my own grief and heartache so that I may somehow make it even the smallest bit okay. So that for every milestone, special moment and hurdle she meets in this blessed life, she has some part of me to share in that. So that she will somehow know and feel the depth of my love for as long as possible. So that I can still be her mummy, and give her advice, encouragement and support from the rainbows. So that that she will never forget me.

I’m not entirely sure how it all came to pass, this epic mission of mine. When I was first diagnosed and in hospital, I received so many amazing gifts from my nearest and dearest that included recordable stories, keepsakes for Nyah, writing paper, memory journals, etc. My cousin even organised a huge box from Hallmark that had hundreds of dollars worth of beautiful cards inside. One for each of Nyah’s birthdays and more. As I look back, I can’t help but think that my incredible friends and family already knew this would be my kind of mission, even before I did. They knew that I wouldn’t be one to just sit around. That I’d try to have things as organised as I possibly could. And so, it began. Small at first, a few things I picked up here and there with the intention of wrapping it up with a birthday card holding words of love for Nyah. But, as things so often do in my life, my mission pretty soon grew bigger, and bigger and then gigantic. If you haven’t already guessed, I’m an all-in type of gal and so if I was going to do this, I was always going to end up doing it to the very best of my ability and to the very edge of my limits (right down to the coordinating wrapping). I collected gifts and procrastinated for quite a long time before actually starting, putting off the moment I would write my first card by doing everything and anything on my long list of ‘things to do before I die’. I filled out memory journals and ‘About Me’ books, recording for Nyah as many details of my life as I could. I scrapbooked, created photo albums, worked on her baby books and lots more, and this in itself felt like such an achievement. All those little conversations I had with my mum about her life and childhood, her family, memories triggered by something random, have always been cherished by me. I ache at the thought that Nyah and I won’t share in this as I randomly recall something crazy or funny about my life, (most likely insignificant, but a part of who I am none the less). I tried to jam as much as I could into these memory books so that Nyah won’t miss out on the edges of me. I also keep a journal for her each day, filled with photos, memories and bits and bobs that I have collected. Usually only the happy, loving moments (I neglected to write about the 5 minute tantrum she just had because I wouldn’t allow her a listening story before bed)! Still though, always at the back of my mind was Mission Nyah which had become so very important. I desperately searched for a place to start, terrified at the thought of leaving before I could achieve my goal.

I clearly remember the night I laid everything out on the lounge, sorting all the gifts into ages with matching cards, then realising just how big this mission was and what it would cost me in terms of my own grief. Realising that I was basically aiming to parent my child up to the age of 21 and beyond with just a few cards and gifts was incredibly overwhelming. Despite this heaviness, it was also exciting. I had purpose and drive again after loosing so much of this when I lost my job. Another reason to fight for more time. I made myself a promise; one card/gift per night, breaking it down just enough so that I could start. I made lists of all the key moments, milestones, hurdles and times I needed my mum and planned out how I could offer my own advice and guidance for those. Things like love, bullying, friendships, boys, loving yourself, work, etc. I selected gifts that were meaningful to me as a child, reflected what I know of her little soul now and also represented special memories for us and our family. I organised and wrapped a lot of my own special pieces of jewellery and keepsakes, and used some of the money that was fundraised for us to help finance the whole affair. I wish I could share more with you about what’s actually inside Nyah’s gifts. I feel your curiosity Dear Reader. I want to share with you. Truly I do, because so many of you have helped me and without you a lot would never have been possible. But I know, one day soon Nyah will read this blog post (Hi honey, I love you!) and I don’t want to spoil her surprises.

Writing my first card was excruciating. One of the worst emotional pains one could ever feel. Layer upon layer of heartache as I sat at my dining room table and wrote to my 6 year old daughter who was only just 5. The thought of not seeing her 6th birthday and of her not having me there, the unfairness of it all, picturing her reading the card, was I giving her the right advice? Would she like her gifts? How could there ever be adequate words to express my love? etc….. endless layers. I sobbed the whole time and it took me about 3 hours. I’d like to say that it has gotten easier, but that would be a huge lie. Each birthday card has proven to be just as hard as the next, and over the last few months, most nights after Nyah has drifted off into sweet dreams, I have faced the unavoidable grief that is tied to this big act of love. The longest card has been well over 10 pages and about 5 hours worth of effort as I wrote to her about her (hopefully) impending motherhood. So many things I wanted her to know about how I felt about my own journey as a mother, the things I learnt, helpful advice, support and encouragement; I couldn’t bear to miss a thing. It is the hardest thing I have ever had to do in my life and each card contains a little piece of my heart that has broken off and been wrapped inside in the process. Each card that I finish and pack neatly away in her pink box brings a sense of relief. I know that these words and gifts will make such a difference to her journey without her mum. Not that I really think I could ever parent my child after I die, or that the daughter magnet will be her most prized possession, but she will be reminded that she is loved by her mummy, and that makes it so worth it. A thousand times over it’s worth it.

A well intentioned friend recently posed the questions, “what if she doesn’t like the gifts?” and “what are you going to do when she is 9 and sits there and opens them all at once?” Ouch. Like I said, well intentioned though not necessarily tactful. However, she does have a point and this is definitely something that has caused me a lot of angst. The second question was an easy fix. I admit, I have threatened Ben within an inch of his life. He wouldn’t be so silly as to let her open any gift early for fear of making it on my ‘shit list’. Yes Dear Reader, the SHIT LIST. A very real place you do not want to end up. I have big, BIG plans for the people who somehow end up residing there, that mostly start with H and end with AUNTING (not that I would know what that looks like because I’m terrified of scary movies, the last one I watched was The Ring, but I digress). Seriously though, knowing my child this is something she is sure to try, many times. I sure would have! I have enlisted the help of Ben, my parents and friends to make sure this hopefully doesn’t happen. In terms of whether or not she will like the gifts, well the answer to that question is I really don’t know. How could I possibly? I can’t help fall apart as I type that because I so desperately want to know my Nyah Joy. I would give anything to know if the colour of the keyring I picked out will be her favourite still at age 16, or if she will choose to wear gold or silver, etc. So many questions that, like I said, you take for granted as a parent. I think I may have driven myself half insane with worry about whether or not she will like, use and appreciate what I have selected. I’ve tried hard to find things that are meaningful, sentimental and timeless and have had to accept the fact that I have done the very best I possibly could and that is enough. I can’t make it perfect or fix it entirely, because the only way to do that would be to be here to select her 21st birthday gift in the weeks actually leading up to her 21st birthday. I just pray that one day she knows how much love, time and effort went into the smallest of details.

I often wonder why I’ve been given this time from a spiritual perspective. I used to find myself longing for the time when I was just ‘finished’. And then I could sit and do nothing. You know, like a normal person. Watch some TV at a normal time or something, rather than at 4am when I finally crawl into bed at night. Each time I was admitted to hospital or walked out from a crappy clinic appointment, I would beg the stars to “please just let me finish”. It didn’t take me long to realise though that this will never actually happen. Pre-cancer this was always my norm too, it just looked a little different as I busied myself with work. I was always doing something; writing lessons, working on portfolios and observations, etc. I have also very quickly realised that there will always be someone to write to, to tell them just how much they mean to me. I struggle a lot with guilt when taking a break from it all, and find it impossible to relax, even when I am smack bang in the middle of a cancer slump and can barely move from my bed. How could I possibly risk not waking up tomorrow and Nyah not having a 17th birthday card/gift from me? It is this that sees me pushing through to get the job done. There are no doctor’s orders for more rest that could ever change that. I also have this huge, terrifying demon of a thought that is currently clinging to my back. What happens when I am actually ‘finished’? Is it time to die then? To lay down and accept my fate. No. No way. I figure, they can’t take me if I’m not finished right?! I realise how ludicrous this sounds and can hear the words I’d say to someone who suggested such a thing, if I weren’t the one trying to rip the demon’s arms from around my neck. Ludicrous yes, but a completely genuine battle for me at the moment. Throughout these dark moments, my superman is, as always, a constant support, coming up to gently rub my shoulders, offer tissues and forever with a cup of comforting tea. He alone knows the depth of my love for our baby and what this act has cost me.

Dear Reader, do you want to know something very exciting?! In September, I actually finished the first part of my mission (its now so big it has parts). I wrapped up Nyah’s last birthday card and gift. I actually did it! Crammed a lifetime of love into 4 pink tubs and now, no matter what happens, Nyah has a card and gifts for each of her birthdays up until age 21, plus her graduation, housewarming, engagement, wedding and pregnancy. The peace and comfort I have found in achieving this goal has been indescribable and I am now onto mission parts 2, 3 and 4. Part 2 is pretty much a repeat of part one for Nyah, just for Christmas. Do you know how hard it is to find 21 different and nice Christmas cards!? Mission parts 3 and 4 are also well underway. Birthday gifts for my gorgeous niece Chloe and nephew Nate. Whilst emotionally not as hard as Nyah’s, these have been tricky in that my little loves are still so young. Though their personalities bloom more and more each day, I’m yet to discover too much about who they will be in the future. What I do know though, is their Daddy (my brother Drew). I have shared much about our wonderful childhood with them and based a lot of their gifts around this. They will also have a little something from me until age 21. Then of course, I’ll move onto my Superman and his future love (hopefully), mum and dad, my beautiful friends….like I said, the list is endless. I have realised recently that I may have developed a slight shopping addiction as a result of this mission. No trip to any shop is a gift opportunity wasted and I haunt all the local gift shops weekly for any new additions. Online shopping and my credit card have become a very dangerous combination at 3am in the morning too. Between you and I, the post lady knows me by name, has somehow concluded that I must be a shift worker and has a lovely relationship with my dogs when she delivers my daily packages!

I cannot finish this blog without a huge heartfelt thank you to every person that has helped me in my quest to leave a lifetime of love. Whether you have purchased gifts, donated money, offered ideas, etc, please know that even the smallest of these acts has had the biggest impact. I cannot find the words to let you know how thankful I am for making the task just that little bit easier, and helping me breathe when sometimes I feel like I am drowning. I often wonder how you know? Know that I’m struggling and then all of a sudden your random message appears and I am reminded of my purpose. In July this year, I actually got to tear up the first card I ever wrote for Nyah’s 6th Birthday. It was a moment I will never forget. I tore up that card into a thousand little pieces, brought her a new one and wrote simple words that explained how excited I was to share her special day with her. And have the most magical, wonderful birthday celebrations we did! I got a little cocky a while back and actually didn’t do a card or gift for this Christmas. I decided to live on the edge and make a bet that I would be here for that too. 10 weeks and counting Dear Reader.

I love this blog so, so, so very much!!!! I can imagine your little girl opening these gifts and cherishing them. I can also imagine you opening them together as milestones pass and you keep ripping up cards. Go you! And your husband and his future love – wow what a beautiful thought for him. I am sure you are his big love. Reading your blog I don’t know how it would be possible that you wouldn’t be. You just radiate love! He is a lucky man xx